February newsletter 2021

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March Newsletter 2021

We started off the month wrapping up Rare Disease Day by thanking our sponsors (NORD, EURORDIS and Rare Disease International Official Pages) for their support, all our viewers who took part in our #showyourstripes campaign and our special guest seven-year-old Ernestia Shamwarira who wrote a short-spoken word poem to support undiagnosed children living with rare conditions in Zimbabwe.

For this month our focus was all about Woman and Girls empowerment, awareness and advocacy in commemoration of Women’s month.

The 8th of March 2021 was International Women’s Day. The theme for this year was Women In Leadership with the objective that woman face many unknown and known challenges throughout their lives but are still the voice of reason for many worldwide companies, global initiatives, organizations and government policy programs. At CYC we chose our director Trudy Nyakambangwe to be our leader by posting a short 2 min video about our position as a non-profit organization as the voice for many woman and girls living with rare diseases. We challenged them to be strong and never fear taking opportunities that would help them reach their full potential, in the words of our director, “do not let the stigma and discrimination of having a rare disease pull you down or destroy your self-esteem, we stand with you!”

We took part in the global women’s day #choosetochallenge initiative, our Program officer (Hazel Muzembe) and Communications officer (Roshni Rana) rose their palms up to support and advocate for woman and girls living with rare diseases. Hazel chose to challenge woman “to discuss about mental health issues”, and Roshni chose to “woman to challenge the status quo and advance beyond the outdated norms that unjustly hold some woman back”. Both advocacy projects left a big impact for our child and youth care community on social media, we got many women sending in positive messages thanking us for spreading awareness.

To further endorse Women Day’s we also organised the commemoration of Endometriosis Awareness Day on the 21st of March. Our aim was to raise awareness and promote information sharing among women living with endometriosis.

What is Endometriosis?
Endometriosis is a chronic inflammatory condition, where tissue similar to the endometrium is found outside of the uterus. Over 200 million people in the world have this condition and on average have to wait for a diagnosis between 7- 10 years. 

We took part in this campaign to raise awareness for our Zimbabwean community of women who are currently suffering in silence. Some of the symptoms of endometriosis include experiencing excruciating period pain. The period pain went beyond living a healthy and happy life. We found it cause worthy to spread awareness particularly due to the fact that many black Zimbabwean young girls and women have felt invalidated for expressing excruciating period pain. The condition is frequently misdiagnosed as its symptoms are similar to other reproductive health conditions. In addition, expressing period pain is seen as taboo in African culture. Following these important observations, we decided to organize a platform for woman to share their stories, gain more knowledge on their experiences and seek medical attention.

Tendai Bbosa in South Africa, who is a pharmacist and passionate about reproductive health was our host. She has great empathy for people with endometriosis as she also struggled to get her diagnosis with PCOS and stubborn weight.Tendai Bbosa (reproductive heath advocate) ,Fine Kashawu (endometriosis survivor)and Doctor Bismack Mateveke (gynecologist) were our guests.They provided a platform for issues around endometriosis to be discussed.

Dr Mateveke is a specialist gynaecologist who answered questions on symptoms, diagnosis, treatment and management of endometriosis. Fine Kashawu offered psychosocial support as she expressed he strength comes from her experience. Fine now has two children. We received very positive feedback on the zoom platform and Facebook. Besides offering a voice for the women who participated Dr Mateveke and Ms Bbosa offered one free consultation to any woman seeking advice on their excruciating period or who may think they have endometriosis.

With such a wonderful initiative, we were happy to note that our awareness spread across the various cultures and races in Zimbabwe with many women coming out from behind the shadows to share their stories and express their concerns with their challenges with Endometriosis.

We hope to continue to collaborate with local organisation that represent women living with rare and neglected diseases.Not only online but also to host physical workshops which focus on people living rare diseases.Support groups can be setup to create an  opportunity for woman in Zimbabwe to share their stories, build connections with other woman suffering with the same conditions, and learn more about how they can cope and manage some of their symptoms.